Possible Celiac Diagnosis (2 Year Old)

Hi M.,

I'm 50 and have Celiac Disease and it took the doctors 30 years to diagnose me. If I could give you any advice it would be to make sure your son has a blood test and make sure you get a doctor who knows about celiac and is up on how to do the biopsy.

I learned through a doctor in New York that it is important to take at least 6 specimens from 2 different parts of the intestines. Just check with your gastro guy to make sure he is knowledgeable about that.

I also am a part of R.O.C.K. Raising Our Celiac Kids.
I do not go to the meetings, but I am on there email list for gluten free items and information about restaurants, cruises, vacation spots are are gluten free friendly.

I have the website for you and if you scroll down to the bottom you can email them questions and even find a support group...hopefully there is one close by in your area.

http://www.glutenfreedom.net/raising-our-celiac-kids.asp

Just my advice again...when you put him back on gluten, do it slowly.

Bottom line, do your homework.

Good luck,
K.

Hi M.,
I am the mother of two children who were diagnosed with Celiac Disease this past August, in addition I am a Dietitian. My first question is whether or not your pediatrician has down the blood work yet. Both a Celiac Panel and gene test are a really good start.

I understand how difficult it is to think about re-introducing gluten but it is critical for an accurate diagnosis! We had very unique which I am more than happy to discuss with you privately. When the blood work came back positive I didn't want to keep my daughter on gluten for another day because of her atypical symptoms, however, I knew that it would impact the biopsy. It was worth the wait to see the improvement once she was gluten-free.

Please check out Gluten Free Girl on the web (http://glutenfreegirl.blogspot.com/) she is a tremendous source of information, comfort and recipes and she just had a baby girl a little while ago. Celiac disease seems scary at first glance but there are so many alternatives (albeit expensive ones) that you can really have just about anything. Corn pasta for example, is just delicious (potato pasta, not so much). There are loads of resources available - online, local support groups - just start asking questions...
Check with the docs or a nutritionist to find out the best way to reintroduce the gluten before the test...they've done this before. And most importantly, hang in there and best of luck!

My friend and her 3yo daughter have celiac disease and when they are "gluten free" they do so much better. The little girl is the most sensitive to the gluten. The mom said that within a short time of going gluten free there was a huge improvement and they too are right now eating gluten going for the biopsy soon. Her daughter is concerned about the gluten but understands that it is necesary right now to do what they are doing. The way it has been explained to me is that even small doses of gluten products will cause damage but right now with the biopsy coming up it also only takes small amounts of gluten to confirm the diagnosis. Right now i a tough time for you and the little man but set the biopsy for as soon as possible and after that go gluten free. You may find that you and/or husband will feel better after going gluten free. Parents can have it to and not recognize the symptoms if not severe. A.

We went through this with our daughter. She does not have Celiac, but that's what they thought for a while. We changed her diet and had the endoscopy. I'm just wondering why you would have to reintroduce gluten to get the endoscopy, unless they're not going to schedule it for a while. If he's only been off if it for 2 weeks, not all of the damage will be reversed. Ask about scheduling it for asap to see if you don't have to reintroduce. I'm thinking this because when we changed my daughter's diet, they did an endoscopy and I asked if the results would be different because we had cut out the gluten (and dairy) and her GI specialist said that 2 weeks wasn't long enough to affect the results...not enough of the damage would be gone yet.
As hard as it will be to live with Celiac, it's great that you have an answer and can learn to deal with it now. It's so scary when they just fall off of the growth chart! This happened to our daughter and we still don't know why, though we've found a medicine that's helped her gain weight again. I kept hoping for a positive allergy test to blame it on. There are lots of cookbooks out there to help you. Look at "Special Diets for Special Kids". It's for kids with all kinds of allergies...it's full of kids' favorite recipes...so you can make all the fun foods that will work for them.
Good luck!

I just wanted to point out a great website to you:

http://crockpot365.blogspot.com/

A woman whose daughter has celiac, she experimented with using her crockpot to cook every single day for the year 2008 and blogged about her process, along with all the recipes! Most are gluten free and she does have a category list down the left side of the screen. "Gluten free" currently has 375 entries.

Please do some research on IgA deficiency.
With the exception of the doctor's concerns, as you know, we too have great concern about our son's health. I was amazed as how much the symptoms of this deficiency fit the bill for both my children! Now I just have to find a doctor who would be willing to take my child's health as serious as I do.
Tell me what you think after doing your research on this.